Ascending Aortic Aneurysm / My Terrifying Story
My Terrifying Story
My journey began with researching to find the best surgeon for my ascending aortic aneurysm surgery. The aneurysm had grown to 5 cm, and since I have Parkinson's disease, delaying surgery could have made my recovery much harder.
After careful consideration, I chose a highly skilled and successful surgeon in Orange County. My surgery was scheduled for December 3. The operation lasted about eight hours. The aneurysm in my ascending aorta was replaced with specific tubes, and thankfully, my bicuspid aortic valve didn’t need replacement, which reduced the surgery time by three hours. The surgeon told my family the operation was a success.
On December 5, it was time to remove my drainage tubes. A physician assistant came to my room and asked me to take deep breaths as she removed the tubes. The first two were painful but manageable. However, when she pulled out the third tube, the pain was unbearable.
I started tossing and turning, struggling to find a comfortable position. After open-heart surgery, you can't use your arms to lift yourself, and my Parkinson’s disease made movement even more difficult. I called the nurses repeatedly, explaining that the pain was excruciating. They assured me it was normal.
Suddenly, I noticed my stomach felt wet. When I lifted the sheet, I saw blood covering my stomach. Alarmed, I called the nurse again. Her assistant came, casually wiped the blood, and shockingly asked, “Are you still on your period?” I cried out, explaining that I was 61 years old, and the blood was coming from the surgical holes in my stomach.
As time passed, my breathing became shallow, and I felt severe pain in my upper left shoulder and back. Thankfully, my sister was with me. She ran to the nurses' station, yelling for help. A nurse finally came and, seeing my blue lips and difficulty breathing, called a "Code Blue."
My surgeon wasn’t available, but the on-call surgeon, an anesthesiologist, and other medical staff rushed to my room. A radiologist performed an echocardiogram and found blood filling the sac around my heart, preventing it from pumping. I was experiencing tamponade, a life threatening condition.
They quickly moved me back to the operating room. I was fully awake and aware of everything as they prepared for surgery. Unlike the first time, I hadn’t fasted, nor was I sedated before being taken into the operatin
About three hours later, I woke up in the recovery room with tubes in my stomach, gagging and vomiting. My family and friends watched from behind a window, relieved to see me alive.
The surgeon whispered, “You have a new birthday—December 5, 2024. You were reborn.” They told me I had been gone for a few seconds.
Reflecting on this terrifying experience, I focus on the positive: I survived. If I hadn’t been in the hospital when the tamponade occurred, I might not be here today. Life is fragile—a fine line between life and death.
I’m incredibly grateful for the quick action of the medical team that saved my life. Neil Armstrong, the astronaut who was the first person to walk on the moon, died from the same condition, tamponade. Instead of taking him back to the operating room, they took him for a CT scan for further evaluation, and he passed away.
Although my recovery is very slow & challenging after my chest being opened twice within two days; I guess I’m extremely lucky to still be here to share my story!
Thank you.
Interested in more discussions like this? Go to the Aortic Aneurysms Support Group.
There is a huge benefit to having the surgery while fit. I did and found that I had a much more rapid and less eventful recovery. That isn't to say that I didn't have to take it easy for the first few weeks, but if you are fit, then 'taking it easy' involves lots of walking which helps all aspects of your recovery.
yes it is especially since I have done all my care with them except for small problems which can be resolved locally
I received a letter this year too, from Mayo, the breast clinic where I have been seen for the past 9 years annually, staffed by NPs, after discharge from the main clinic I followed up with until I met my five year milestone of no cancer. Letter said the clinic was not for patients like me who do not meet dense breast tissue criteria and who just need followup care. Not true when I was first started there.! I was told this was my alternative to being seen in the main clinic. I know the feeling of betrayal you are experiencing. I even purchased the more expensive Advantage Plan program so I could continue to be seen there. Something changed in healthcare reimbursement I think; not sure what prompted the change. I thought things were working well. But now everything topsy-turvy. It is frustrating to live in the same state as a Mayo clinic and not be able to be seen there. Especially as a former patient who was diagnosed with AAA at Mayo! As one other reader commented, why are they continually recruiting new patients when they won't see the patients that formerly received care with them? Really sorry you are experiencing this. I would try calling back or filling out a form again. Maybe the person was new and didn't understand criteria for appt? Perhaps this is about poor reimbursement from the Medicare Advantage plans? IDK. But that doesn't help the patients who need the care. If that is the case they need to make us consumers aware so we are informed when we choose plans. The squeaky wheel gets the grease....hope you can successfully be seen at Mayo again!
Thank you so much for your support. I have tried several ways to get an appointment and I get to a certain level and that's were they say go somewhere else. I thought Mayo clinic was a referral center and then the patients ounce diagnosed were sent back to their home physicians for follow up . So that is what happened to me. Though I have seen many physicians at Jacksonville Mayo for other important things when I tried to get back in, I can't. So what do they want? for you to continue an open line of care even if it is for an ingrown toe nail as long as you get seen every 3 yrs for whatever????I was last seen 2021 so I missed the cut for a few months??? What is this place the IRS????This is the health system, you are dealing with humans not rentals!!!!!!